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Is this what you want
Michael Ellenbogen
Posted: Sunday, August 9, 2015 4:16 PM
Joined: 11/30/2011
Posts: 4460


After reading another post or two I think I remembered what I wanted to write about last time. Sorry to bring the reality of this but its important.

I am so sick of these caregivers that are in denial or their families who will do anything to keep their loved ones around. Is that what you folks want? Because if not I hope you have had the talk and write it down and even put it on video. These poor folks are suffering so much and they want to add feeding tubes, shove food down there mouth no matter what just to make it seem like they’re helping. Some believe in their religion so it is even worse for these folks. It seem that is an excuse to torture your loved one. I am sorry if I am offending any of you but you really need to think of what is a head. There is no happy end. I personal want to die as quietly as possible completely pain free. I never want any pain at all. They talk about this puree food like it okay. Try eating it and tasting it for a few day. I even went to taste the Think and easy stuff. Its horrible. Don’t take my word try it yourself. I wish those caregivers would may be then they would not feed them that crap. All this just gets me fuming so bad as I hate to see these folks not have a voice. You want to say something but I do not know what their wishes were or when they were made. A good friend of mine wanted to ride it out to the end but most recently changed his mind. Please if you have not already done so make your wish very clearly and leave no second guessing as to what you want.


Sea Field
Posted: Sunday, August 9, 2015 4:45 PM
Joined: 8/5/2012
Posts: 1872


Michael, I was one of the lucky ones in that my husband clearly stated what he wanted for end of life measures and what he did not want.

Along with no extraordinary measures, he also asked that if anything came along, pneumonia, cancer, ... to not treat it, keep him comfortable and let him go.

His doctor was completely on board with this approach.

And the day came when I was put to the test. He did acquire pneumonia. So rather than have it treated, I called in hospice.

I too encourage all PWD to clearly state your desires. It helps us to help you.

Was letting go of my beloved easy? Of course not. But it was the last act of love that I could offer him.

respectfully, Cynthia

Unforgiven
Posted: Sunday, August 9, 2015 4:50 PM
Joined: 1/28/2013
Posts: 2659


I agree with you, Michael. As a matter of fact, I just learned that my father-in-lW, also with dementia is on a pureed diet. Not because he's missing teeth as we all assumed when we went down to visit him, but because he, according to his wife, had already experienced swallowing problems in a previous nursing home. That, of course can lead to aspiration and ultimately death.

I've known my FIL a long time, and he was not at all religious. He would often refer to pneumonia as the old man's friend, because it can end even worse suffering. I spoke to other family members about giving very careful thought to feeding tubes, because that's a ride you don't want to get on if quality of life is already rather poor.

Of course, his second wife is the one who makes that decision, although the adult children may have to voice their feelings about it. I just feel sad for him.

Michael Ellenbogen
Posted: Sunday, August 9, 2015 4:56 PM
Joined: 11/30/2011
Posts: 4460


I so wish they were all like you but when I read the boards it tears my heart out. The biggest problem is AA and no one wants to talk about it and they only say what they believe to be politically correct. They don’t want or even place links on the site to places that may help. If we cannot talk about these things many more will suffer. The average living will is not even good for a person with dementia yet none of these sites will even tell you that. They just want to stick the heads in the sand because they don’t what their donations effected by what is a very controversial subject.


Michael Ellenbogen
Posted: Sunday, August 9, 2015 5:05 PM
Joined: 11/30/2011
Posts: 4460


I must say I am surprised caregivers are here reading this. It was really meant for my dementia friend who may not like talking about it. Not that caregivers like it. But for us it means a lot more. I am glad you are here and hope you let others know. There is mush to be learned. I want to say some nasty things to most of them but I hold back most of the time. I already have the big red target on my back for stating things that did not like. I am still pulling out the arrows, but I hope it has helped some.


Unforgiven
Posted: Sunday, August 9, 2015 5:54 PM
Joined: 1/28/2013
Posts: 2659


Why should you be surprised that a caregiver like me is reading it? I'm going to die some day myself, a d I hope it's with as little pain and xuffering as possible. Unfortunately, current laws in the US limit us to not treating some potentially fatal conditions and letting nature take it s course rather thand actively ending life sooner, at least for human beings.

I had the good luck to sit in with my mother and her primary care physician when he discussed the end of life plan and how far she wanted medical measures to be taken to save her life. Nkw it's tbere, written down in a cgart that will follow her, and less than three months later, I became her health POA.

I will do what I can, within the spirit of her wishes and the letter of the law. Having made this decision many times for my beloved animal friends, I know how hard it is, and for now, I'm glad that decision is out of my hands. That may sound cowardly, but there you have it.

alz+
Posted: Sunday, August 9, 2015 6:17 PM
Joined: 9/12/2013
Posts: 3608


I am not ready to die, even though last week it looked like it was coming pretty fast from other health issue.

a couple people asked around the question of - "well, if you have a heart attack you could ...not call for help", or "God is telling you something, He wants to spare you future suffering."

My granddaughter turned 3 yesterday, my grandson talked to me on the phone today, he is 5. All my women friends of a lifetime have died in past years, my one friend man musician living in an RV with multiple health problems asks me every week - "You going this week?" Not this week, what about you? "Not this week either." He plans to use a hibachi inside his camper playing his guitar.

Big dreamer.

It was life changing to help my Dad take his last breath, to have him squeeze my hand and look me in the eyes and leave. End Alz.

None of my family were present, they have no idea how wonderful it was for me. You may think he would have wished a hefty dose of morphine to not "endure" his final days but he did not express that.- and one could say "well he did not talk so how could he?"

Because of his body language, the way he relaxed when I was near, wiped his head, talked about things he did that had helped me.

Even if I have no one with me I want to be awake to experience the leaving of the spirit from the body. I do not think we lose conscious awareness after the body is dead.

For me to have anything more written down is iffy - there are family who would cut off food and water next time I get a cold!

But to prepare very thoroughly must be very reassuring to both those who sit by offering love and those doing the work of dying.

Important to discuss, unfortunately many of us will end up rushed to a hospital and then a bunch of stuff done to us to run up the bill before pulling a plug.

I know of many people (volunteered at hospice years ago) who suffered for years from horrific chronic illnesses and had the means to end their lives but did not want to.

With skilled nursing death can be painless, and I am going for the full monty.

love and courage


bethNC
Posted: Sunday, August 9, 2015 6:58 PM
Joined: 6/6/2015
Posts: 55


I agree with a lot of what Michael says about end-of-life issues, but I have to disagree on his criticism of the Alz. Assn. for his perceived lack of information or "PC" stands on aggressive treatment of pneumonia and other conditions associated with very late stage dementia. I just did a search on alz.org and found numerous publications, articles and PDFs addressing end-of-life care and things like breathing tubes, feeding tubes, etc.

While these pubs may not be as forceful as I might be in discouraging people from forcing treatment on those in the process of dying, they are pretty clear about the damage and discomfort such treatment can cause. And I believe that they do have to walk a careful line in advocating stopping treatment because the people who come to them for assistance and guidance come from so many different religious and cultural backgrounds. I don't think it is fair to dismiss the Assn's honoring of those differences as "PC."

I presume there are people with dementia, maybe even some on these boards, that want to fight for every last moment of life no matter what. We don't have to agree with their decision, but I think we do have to respect it. And I think that's what the Alz. Assn. is trying to do in their publications.

jfkoc
Posted: Sunday, August 9, 2015 7:03 PM
Joined: 12/4/2011
Posts: 21244


Michael...there are many caretakers that read this forum. For me it is one of the best ways to understand my husband and from understanding comes better care.

I have not nor intend to shoot an arrow into you. Selfishly, you are too important to me.


Michael Ellenbogen
Posted: Sunday, August 9, 2015 7:59 PM
Joined: 11/30/2011
Posts: 4460


If they are in the game to claim support for people with dementia then they should share and speak about places like compassion choices, final exit and others. Talk about the type of things us living with dementia want and need to know. Special living wills for people with dementia. Not what they recommend. I have. Keep insisting I don’t know. You would be amazed on what I know. This is not for everyone and everyone should have choice. But don’t limit if because you may not believe in it. It’s all up to the person who has dementia. Becoming well educated about he reality and what’s ahead can change ones minds and beliefs. I know more on this subject then most. I have even been asked to speak at a leading bioethics forum in hopes to bring change for people with dementia.


FarAway
Posted: Sunday, August 9, 2015 9:02 PM
Joined: 7/21/2013
Posts: 259


I am a caregiver and I, like Alz+, have a firm belief in the survival of consciousness beyond "death". I prefer to refer to "death" as a "transition", and I have experienced enough that actually proves it to me.

My mother and I have never discussed these things. At 82, she is still quite feisty and is part of the large percentage of folks who do not realize they have dementia.

She has a CA POLST form that states comfort measures, but will allow antibiotics and IV fluids, but otherwise DNR. No feeding tubes or artificial means of nutrition.

Every time she starts to think about living in her Assisted Living facility for the rest of her life, she threatens suicide by overdose. Or throwing herself off a cliff. She repeatedly says she does not want to live there and be "spoon fed" -- note, she is not being spoon fed, but some other residents are. She is also in the general population, not in the locked memory care section (yet).

I don't know how to approach this sort of discussion with her. From what she's said, it seems she doesn't want "spoon-feeding" either, when the time would come. But I don't think these types of facilities would not "spoon feed" someone because of liability issues.

It's so hard. How do you find out someone's wishes when they don't even think they have Alzheimer's? And then how do you act on the wishes for them?




Michael Ellenbogen
Posted: Monday, August 10, 2015 7:01 AM
Joined: 11/30/2011
Posts: 4460


It sounds like to me you know your mothers wishes. Don’t confuse someone’s denial with their wishes. A DNR is a real joke if you truly understand what it means. It’s a falls sense of hope. It has been showed an proven that if you place anything next to the mouth they will try to swallow. It has nothing to do with being hungry. It’s been tested with empty spoon over and over and it seems to just be natural for us to react that way. Most faculties will not do anything to shorten her life. I am unsure if it’s that they really care or will they lose the funding at the end. You be the judge of that. If she had what I have in place I could direct you but I cannot. At the very least if you wanted something to happen it would need to take place at home with the great help of a hospice agency. Remember no surfing or pain. Give her as much as she needs to keep her as painfully from of pain. You can not tell what pain she is in just as my caregiver has no idea the pain I am in now. And I am but I live with it. There comes moment when you have nothing to take your mind off of what you are doing as when you may be lying in bed and have absolutely nothing on your mind. I bet the pain is huge at that point. What may feel like a 1 or 2 may suddenly be a 5 -6 because they have nothing else to keep their mind occupied. I am sure you know what I am saying. You are able to deflect the pain but they are not. Some come back and say well maybe they don’t feel pain. That may be true, but I would sure hate to know I would have lot someone suffer so long if they did. I can not even begin to tell you what doctors do behind the scene in helping people die. While it is not talked about it happens every day. It all depends were the person is. It will unlikely never happen in a AL. I have heard of cases were the person had all the wishes written and still not followed. Who the hell gives these people to push their believes on to others. I could tell you if I get to that point and they pull a stunt like that my wife will sue them for all they have as I have very well covered. I just hope to be gone before that time. That’s only my backup plan which I hope will never come into play. It is suffering from the minute you go down that road. I am suffering just thing about what is coming.

And I should say it is not only AA who does this but most of them. Very said because many of my friends who have YOAD are planning on taking their own lives. There should be places that can at least guide them instead of turning their backs away on the subject. My dog had better choices.


The_Sun_Still_Rises
Posted: Monday, August 10, 2015 8:42 AM
Joined: 7/24/2015
Posts: 3020


Hi Michael,

I don't think believing in an afterlife and wanting to stay alive at all costs are mutually exclusive. I believe in the afterlife (or at least in the possibility), and I am more than ready to go if given the chance. That said, I think it is a very personal decision.

It is also an issue for those who are caring for us...perhaps a burden even(?). Like, for me, I never want to go into a home for people with dementia. While I am sure that there are some good places, I don't think I'd find my way to one. So, for me, I would like my life to end at about that time. The problem is, we have no Dr. Kevorkian anymore...so who, and when, does that decision get made?

For me, it is easy...I don't have a thyroid so I can simply stop taking my thyroid med and it is off to whatever is next for me. But what if I am not of clear mind at that point? What if I can't remember that was my wish? I could never hope for my daughter, or any caretaker of me, to make that decision that today is the day.

And there is nothing politically correct about what I am saying...but I am being honest.

Did anyone watch Still Alice? I absolutely love her idea.

That said, I also have a new grandbaby and omgosh is she sooo sweet...how can one walk away from that?! And the amazing blue sky and sun thru the leaves?

I don't know how things will ultimately end for me. I have to stick around for the house transfer, so I canceled my DNR/DNI...and if I can no longer remember anything, my daughter will have to face the decision of when she can no longer care for me. My new health directive says to stop my meds if I should ever have to be placed in a home...but who knows if anyone will follow thru?

And as it is with my mom, who is elderly, and has blood clots in her lungs...she is DNR/DNI...but when she is sick she always wants help. We have talked about it a lot. The challenge comes in with fear and our hard wired instinct for survival...how do you, when you are struggling to breathe, say let me be? You can't really...you beg for air.

Let's all hope that we each go peacefully in our sleep when our time comes.


The_Sun_Still_Rises
Posted: Monday, August 10, 2015 8:43 AM
Joined: 7/24/2015
Posts: 3020


PS: there is an HBO documentary called "Coma" about people who have come out of comas, but are still struggling for full consciousness...might help give further insight into the complex decision making.
Michael Ellenbogen
Posted: Monday, August 10, 2015 9:22 AM
Joined: 11/30/2011
Posts: 4460


You are so right as far as being easy. I also don’t feel it is fair to place such burden on our loved ones. It take lot of courage to do this. Why dump it on them because you are uncomfortable with it. I know so many that only wish their loved one gave them clear directions. One of them is going true 10 year of hell and her husband is still around and suffering. The difference is as you may be right. We may change out mind but it would be to late. It would be based on the decision we make to today when we are still so capable of knowing what is a head of us. Don’t you feel just a bit concerned that you will make their lives more aggravating with dealing with this rather then enjoying their own lives. Don’t you want them to remember you as a your are rather then some person they may be hating from time to time because they are overburden from trying to take care of you.

It real does suck to need to think so far ahead and look at it but it is even more unfair to place the burden on the ones that loved us. We have a choice with this disease at this point and they don’t. I would probably recommend this to someone even very wealthy but just take those steps later on in the process. This is hard to talk about and I realize many want to live to the end. I say good for you if you have the courage to know what is ahead of you and you are so willing to do it. You have more guts than I do.

This is the place I went to for my living will. While it is not the best, it is the best out there as of today. It pushes the limits of the law all the way. I have checked will lawyers and it is valid.

http://www.mylastwishes.org/

I should also claim I am an advisor for them. It seems that most people will find something wrong with that. I hope this in not like telling people about my own book. Its kind of sucks when I am connected with so many good things and I am not allowed to tell people about it because I am connected to it. Yet these items would be life saving to many.


alz+
Posted: Monday, August 10, 2015 11:56 AM
Joined: 9/12/2013
Posts: 3608



http://www.mylastwishes.org/

thanks for link -

excerpt from site:

"Refusing all food and fluid allows a peaceful dying, usually within 14 days, which observing hospice nurses rated more peaceful than physician-assisted dying. Dying by medical dehydration is legal, ethical and moral. Religious authorities may consider it consistent with their teachings.

Legal: Common and constitutional law grant competent adults the right to forgo — in advance — unwanted intrusions of their bodily integrity, including “force-feeding.” Those responsible must still offer food and fluid by placing these vital substances in front of patients. Otherwise, they could be charged with homicidal negligence or euthanasia. The two-part request, “Withdraw hand-feeding/drinking, but do not withhold food and fluid,” can be referred to as “natural dying.”

Ethical: At some point in the progressive disease, dementia, the harm and burdens of hand-feeding/drinking will outweigh its possible benefits.

Moral: Enlightening education can justify feeling it is right — not cruel — to allow advanced dementia patients to die to avoid prolonging suffering that may include unrecognized, untreated pain. For slowly dying patients, it is wrong to equate food with love, or feeding with loving.

Consistent with religious teachings: Religious authorities may apply the principle of proportionality included in many living wills to judge patients’ intent not to end life, but to discontinue treatment. They may judge the cause of death as the underlying disease — dementia destroyed brain functions required to put food and fluid in the mouth.

To preserve life, inform all engaged in advance care planning — especially those harboring the “dementia fear” — they can avoid prolonged dying in advanced dementia. Encourage them to plan now to live longer. This positive approach may motivate more people to complete effective living wills. It may even eliminate their fear of “death panels.”

Terman, Ph.D., M.D., is a psychiatrist and bioethicist who leads the nonprofit organization Caring Advocates. He authored “Peaceful Transitions: Stories of Success and Compassion” and “Natural Dying — Living Will Cards.”



Unforgiven
Posted: Monday, August 10, 2015 11:57 AM
Joined: 1/28/2013
Posts: 2659


Faraway , that is exactly the POLST my mother put into place, in my presence along with her doctor, just a few months before her diagnosis. She wanted, basically, palliative care but no heroics anc ceftainly no CPR. Ironically, during her hospital admission a few months later, I had to remind her and the admitging physician bout the DNR, as she couldn't understand the question he was asking her.

The big issue is, will that POLST stick in my home state, which is becoming increasingly conservative in its laws. You need to understand, Michael, that regardless of personal views about life and death, our government takes much of that choice away from us. We cannot actively terminate life or even allow death to happen under certain circumstances, because that would be neglect of a vulnerable person in our care. I wish this weren't so, but it'sbunlikely to change in your lifetime or mine, given the political climate, no matter what we do.

The most we can do is to take the hospice point of view to let the patient be and just keepbthem as comfortable as possible while the natural process of aging and death takes its course.

When is the moment? We all want to squeeze every drop of joy from life, so I as a caregiver will have to determine when that moment is. Because individuals with impaired cognition will still experience happiness.



skericheri
Posted: Monday, August 10, 2015 1:55 PM
Joined: 12/10/2011
Posts: 287


Michael---Thank you for information about mylastwishes/org

While I do not have dementia, completing the form will give me peace of mind.

Unforgiven
Posted: Monday, August 10, 2015 2:02 PM
Joined: 1/28/2013
Posts: 2659


Yes, I followed the link and bookmarked it. I already have trusts, POAs, and advance medical directives done by a lawyer, but just in case . . .
Michael Ellenbogen
Posted: Monday, August 10, 2015 2:13 PM
Joined: 11/30/2011
Posts: 4460


As far as I am concerned everyone should complete a form like that. You never knew what can happen in life. One friend of mine was in car accident and within a year of full recover it turned into full dementia. It was to late to create such document.


Michael Ellenbogen
Posted: Monday, August 10, 2015 2:17 PM
Joined: 11/30/2011
Posts: 4460


If you become a smart and active caregiver and understand the law as I have there are options. Sadly they only work for 80 % of them. But I will not say what can happen in your own home.


skericheri
Posted: Monday, August 10, 2015 8:16 PM
Joined: 12/10/2011
Posts: 287



Michael---Things are really tight here moneywise. Decided to do some additional research and came up with something that can tide me over until my financial condition improves.

Found a site at:

http://www.polst.org/

Clicked on my state (NC) and was referred to their site

There I found a 14 page pdf document consisting of Advance Directive forms. There was 1 that is called an Advance Directive For A Natural Death. The amazing thing is that each of these documents has the option of being filed on the state website

Cost-wise Per the NC site

The fee for each directive to be registered is $10.00.

Check the directive you have enclosed with this form:

o A health care power of attorney;

o A declaration of a desire for a natural death;

o An advance instruction for mental health treatment; or

o A declaration of an anatomical gift





Michael Ellenbogen
Posted: Tuesday, August 11, 2015 6:38 AM
Joined: 11/30/2011
Posts: 4460


All because you do not have funds don’t let that stop you from asking for pro bono work for some of these items. If you have dementia skericheri I would be willing to see if I can help you here if you want to reach out to me privately. I cannot begin to tell you the criticality of doing this yesterday.


The_Sun_Still_Rises
Posted: Tuesday, August 11, 2015 9:04 AM
Joined: 7/24/2015
Posts: 3020


Michael,

I wish I could have the luxury of saying I wish my children to remember me as I was...but my kids are all young adults, all in the process of launching, newly out of the house, and as such don't really know me yet. And even though my physical health plummeted, they kept their youthful distance. I don't think we think about our parents as people until we are in our 30s. I am surprised my youngest wanted to come and help. Not sure if it is because the baby and her wanting my help...but at least it is mutual.


Michael Ellenbogen
Posted: Tuesday, August 11, 2015 9:30 AM
Joined: 11/30/2011
Posts: 4460


You would be surprised what kids know. About five years ago I was on a fox station interview were my daughter had been shelter from much of what I had been doing with AD. The reporter asked her something and I will never forget it as it brought tears to my eyes then and still does today. Not her exact words but something like My father was always a very confident person and all ways not what to do, he is no longer that person. So very hard to hear and it was so true. I had never realized till that day she could see what was happening to me. She did not even live at home with us as he was lining many sates away and only about 22 at the time. If they don’t make sure you let them know now. Tell them that you want them to focused on the good you had with them and that is what you want them to remember. If you can not do it verbally start to write some letters now for them. Something they can hold onto forever.


Mimi S.
Posted: Tuesday, August 11, 2015 10:05 AM
Joined: 11/29/2011
Posts: 7027


Michael, I hope you can acknowledge that not all of us with dementia feel as you do. I can certainly acknowledge that there are others who do.

I do not. Although I do acknowledge that there is a point at which I want all meds, except those which help me to be comfortable, to be withdrawn under the supervision of a doctor. And my children have been part of that conversation.