At what point do we move toward this for .. not only us and our afflicted loved ones...but also for those generations to follow?

Doesn't it make sense to support a family's right to eventually invoke cessation of life for their loved one? After all, we inevitably make all the other decisions for them.

11 years for me. Mom is in perhaps stage 6. Mom manually assists her bowel movements. She pulls her feces out of her anus. She no longer knows me. She devastated our family. My older brother died from the stress of her. I am starting to fail healthwise. My sister went MIA and changed her phone number and name. Maybe she was the smart one.

What is the sense of keeping mom alive? For what? So we can spend massive medical resources on her instead of diverting those resources to save kids? She's 90 years old for Christ sakes!

Mom should have been put to sleep humanely years ago.

I think the point of all this is why do we even need to let them suffer. A movement does need to be created and people need to stop accepting what we have today a the norm. It takes people to want to help change it. Not choose who think it can’t be changed. Are there people here would be willing to help fund such a an idea. While I have been working with lawyers on this very topic it as been going at a snails pace.  I think if I could throw money at it would expedite the issue. Are there people on this form that would want to help out with such a intuitive.

Whoa..."you can get Hospice and then they die".

 Hospice does not cause death!!!!!

I respect everyone right to choose the time they want to die -it's called suicide and some states have laws that will assist the person to commit suicide. But an issue that could happen, and something we must be very careful about, is when a governing body or even family members says someone needs to die.

Right now we do have a way to allow a person to die-they or we as their advocates- can refuse to treat a terminal illness, or reject feeding once someone no longer wants to eat. We can even stop treating infections that often lead to death.

I believe the US is woefully unprepared to help caregivers cope and care for LOs with dementia and other illnesses and that is what create a huge burden on families-not the fact they have a very sick LO. That is what I would like to see addressed and funded. Some towns have entities that have done a better job addressing our needs, but too many people are totally without support. Families would not be so overwhelmed and desperate if they could get support and financial help.

Is your mother alone on the toilet? Does someone help to clean her and wash her hands? The issue here is not that she is doing this-she is and she won't stop- but can it be mitigated? Is she constipated and need more fiber or liquids in her diet? Here's an article on it:

https://www.nursingtimes.net/clinical-archive/continence/manual-evacuation-of-faeces/205796.article

In my case I am always with my mother when she is on the toilet. I put a pretty hand towel in her hands so she has something to fondle. If she needs help (many times an Alz patient will lose pelvic control or won't know how to "push"), I am the one who helps remove anything stuck. I never let her go more than 3 days without a BM. I use a laxative if necessary because it is often constipation that makes a dementia patient reach for their own backside.  Good luck!

Hi Todko, Not really sure if it is your mom who is suffering, or you....or both. It appears you are having difficulty coping with the responsibilities of caring for a LO with dementia. I get it. I've been there. My suggestion is for you to get help. Don't let this disease take two victims. 

Can you get your mom into a NH? I think the stress of caregiving on your health and peace of mind is beyond what you can tolerate and if you can let someone else take the burden of the day to day care and allow you just to be a daughter life could be easier for you. If money is an issue, there is Medicaid. 

"Euthanasia" of a loved one is not the answer to caregiver stress. Getting help with caregiving, whether it be placement or hiring caregivers in home, or getting respite so you can have a life again....that is the answer.

No one said you have to go it alone. This journey is too long and too hard to not have help. 

Please folks, there are two sides to this question.

Please respect both sides.

Please do be careful of forming opinions here.  There are two sides to this & we might not know all that is involved. 

eagle

Todko,  as always great discussion and lots to think about.  (Getting additional help and toilet issues included.)  My father also had severe difficulty with bowel movements at the end.  For us, it was as though his brain had quit telling his bowels to move.  We also had to do manual extraction.

As far as the death with dignity discussion, I am 100% in your camp on this.  Had it been an option for my father, I would have chosen an assisted death.  Unfortunately my state does not have a death with dignity law.  And even the five states that do, completely exclude dementia patients.   I personally believe, that this issue will be front and center with, and for, the baby boomer generation.  But it is up to all of us to speak out.  We have to help others understand this disease and the long term ramifications.  

Unfortunately, I do believe that this will come down to just one thing, money.  When we should keep our focus on compassion.  By the end, I was praying for my father's death.  I didn't want him to die, but for heaven sake, we wouldn't allow our pets in the country to suffer in this way.  It is simply inhumane and cruel to insist they go on.  

I have spoken, in my state, at a senate subcommittee hearing to support a death with dignity law.  My goal is that eventually, when assisted death is accepted, that we can push for legislation that allows a person to make their own decision, while their mind is still healthy and strong.  I call this an Advanced Health Care Directive Specifically for Dementing Illness.  Any adult could walk into their lawyers office, and fill out the form, which would also include the ability to state their wishes for aid in dying should they become a victim of dementing illness.  In this directive, there would be specific boxes to check, where the person has the right to decide at which point they are asking for assisted death. i.e. I can no longer walk, talk, toilet, hold my head up, feed myself, etc.  But each individual would make their own decisions.   This would be considered the "consent" that Still Waters has mentioned.  

Trust me, I've already asked my attorney to draft this sort of form for myself.  I have spoken to my children and my husband, asking them to uphold and support my decision.  If people won't listen to me if I get this disease, then PLEASE listen to me now, and respect my personal wishes.  

And Michael, you know I am, and will do, whatever I can.   

I believe part of the issue lies in spelling out what we want and spelling it out in our advanced health care directives- the sticking point appears to be that no one can administer the pill or potion. We must do this part on our own.  

Brittany Maynard is one example. You may recall her wish to die with dignity.  She was capable of taking the medication on her own that would end her life.  Currently, even in European countries that provide assisted death,  the patient is required to self administer.

She was a "California woman who was diagnosed with terminal cancer and moved to Oregon to use the state’s “Death With Dignity Act.” Compassion & Choices, a life-rights advocacy group Maynard worked with.

Dr Kevorkian had his patients press the button or pull a lever, as I recall,  to administer their deadly dose of medicine. He closely assessed  his patients and carefully video/audio recorded his patients wish to die. In many cases his patients had debilitating diseases/conditions that the patient had suffered from for years. AD meets the criteria for debilitting conditions and subsequent "years of suffering." However, in Kevorkian's cases the patient was able to consent verbally or in writing and was capable to press the button.  

It's a slippery slope for sure for the medical professionals wo do not want to be charged with murder.

No need to reinvent the wheel quite yet.  Join exisiting groups.  Here's one group...your input should be added to the movement they have begun  Compassion & Choices, a life-rights advocacy group.

Sadly that group does not support people with dementia yet.

Full disclosure, my dad recently died. I would have done anything to keep my dad with me longer. I would have hospitalized him, something he did not want, and so I didn't put him in the hospital, because I was following his wishes. I was respecting the wishes he put in writing prior to his steep decline. I had a dietician come over to help me with how I was feeding him and offering him drink. We had Chester the Therapy Dog for a visit.  I took him to a neurologist after he had a stroke. I took him to an ophthalmologist when his vision drastically declined. All of this was after he rejected operations that were proposed by doctors and specialists. These operations all carried risk and were acknowledged after quizzing would have had a high chance of resulting in permanent damage to my dad. My dad didn't want to be a guinea pig for the medical personnel to try out their new technique with a resident at the helm. Go figure that one out. He was completely rational. 

There were days during the final months of his life when my dad rejected food and drink.  The dietician and numerous other people including relatives who had nursed their loved ones in the final stages gave me advice about tempting him with food and beverage, along with the standard world wide web information available to all. Many suggestions were given and I followed many of them. Some of them worked and some didn’t. There is no doubt that my dad’s calorie expenditure was higher than his calorie intake, in spite of the full fat yogurts, ice cream, Ensure, warm chicken noodle soup and small frequent meals he was offered and accepted. There were many other meals spit out, swiped away, all his communication to me about what he wanted.  It was agony for me to see my formerly robust dad wither away. I wished that he would be taken quietly in his sleep. My friends know that. However, there the similarity between our stories ends.

In spite of how I felt, I still acted in accordance with my dad’s wishes. I offered food and water and ginger ale and swabbed his mouth in order to keep him as comfortable as he could possibly be. I and my dad's care team turned him, kept him warm, played soft music, hugged and kissed him, and told him hundreds and thousands of times how much we loved him, how much we all loved him. I called his university and his former students from around the world sent emails with touching stories about how my dad had positively influenced them, which I read to my dad out loud. I urged my siblings to visit. I told my family to visit him now while he was alive.  I used all avenues that were legally available at my disposal to help him die comfortably and with dignity. Much grieving was occurring on the part of all our family during his journey of decline.  I called hospice and they had a nurse at the home every day. I had round the clock caregivers. Yes, that was a lot of resources to devote to a dying man, but I only had one dad.

Euthanasia is quite different than mercy killing. Also, let's draw a clear bright line between euthanasia and suicide and between those two terms and death with dignity laws in the five states here in this country where a person with cognition intact and a diagnosis of a terminal illness can apply to be given a lethal dose to self-administer at the time they choose. It is a very slippery ethical and moral slope to apply group solutions to individual cases. As soon as we are grouping people by diagnosis and then giving permission for lethal injections by others or euthanasia, then I have to stand up and say NO!

Let's take a little look at history. This kind of provocation towards mass hysteria and insular reasoning led to executions of millions of people due to their race, infirmity, religion, sexual orientation (holocaust). It led to the injection of Black men with syphilis (https://en.wikipedia.org/wiki/Tuskegee_syphilis_experiment). The issue of sterilization of persons with cognitive impairment has resurfaced. https://www.washingtonpost.com/news/volokh-conspiracy/wp/2014/04/18/sterilization-of-the-intellectually-disabled/?utm_term=.d7f1f269d525And institutionalization of persons with developmental disabilities who are now our community members was de rigeur. 

All wrong.

If the Alzheimer's organization were to take a stand on this issue, I personally would vehemently protest the group stance, and stand tall and strong to protect the rights of the individual in question. Yes, I understand there are some people who feel that life isn't worth living if a person cannot feed herself or if they cannot carry on certain mental functions. I do not stand with these people.

mps

My sister feel differently. She always has. She has a DNR in her wallet, no matter what. She would like to be assisted in death if she gets Alzheimer's. Maybe it is something a person could have written up when they can still give consent.... They could specify what point they would like to leave this earth. I am not so omnipotent as to feel I can make those judgement calls for others.

I also agree with Tess that your mom needs assistance. Bladder and bowel issues are tough but need to be dealt with. My mom only had one episode where we had to manually remove her feces. I quickly figured out how to better manage her bowels. It takes careful watching and leveling the food, fluids, fiber, and laxatives to keep her going. It sounds like your mom needs some help.

Everyone's situation is different. Sounds to me like the original poster has no support from his family. The disease has destroyed his family as it did mine. It also sounds to me like he loves her very much if he cared for her for 11 years. Perhaps he does not want to put his mother in a nursing home. Personally I would rather be dead than live in a nursing home, especially with Alzheimer's, I would not want to spend even one night in a nursing home and I am sure my mother would have felt the same way, based on what I witnessed in the past 5 years. So if he is not able to care for his mother at home anymore and does not want to put her in a nursing home then what choice does he have? None.

There needs to be a consent form in the future. I am sure we can all support that.

Bela,  I walked the Nebr. state capitol hallways with Brittney Maynard's husband, Dan Diaz.  What a wonderful man.  It was very empowering to be with him, and hear about his experience with Brittney.   He is holding true to the promise he made his wife, that he would do everything he could, to support death with dignity all over this country.  Her brain cancer was more than painful, it was excruciating.  She was on the strongest and highest dose of painkillers that can be given.  Yet as Dan said, "It wasn't the doctor there with her at 3:00am, when she was vomiting because of meds, and crying because the pain was so intolerable."  Only those that must bare first hand witness to this kind of death, understand the relief that death with dignity can bring.  

MPSunshine, I don't believe that anyone is suggesting a blanket solution for every disease process.  What I am supporting is the individual right of choice.  An individual choice, that I believe can be made long before someone receives this diagnosis, and they are therefore, unable to clearly state their wishes, and unable to administer their own medication.  You may well make a different decision than I would.  That's what this country is founded on, individual right of choice based on our own morale convictions.  

What is the difference between euthanasia and mercy killing.

If a POA becomes invalid once a person's cognitive ability prohibits choice how could any "form" hold up legally?

jfkoc,

Here is a link that explains and defines euthanasia and the subtle difference between using this term and the term mercy killing from an ethical and a historical perspective. You will get to the difference if you read the whole article.

Many of the differences revolve around circumstance, intent, consent and agency, much too complicated for me to get into here.

Compliments of Wikipedia who says it better than me:

https://en.wikipedia.org/wiki/Euthanasia

Also I have included a link on the difference between mercy killing and a merciful death with suggestions for terminology to include in a legal form, compliments of the world-wide-web. The article is entitled “Will this be a mercy killing or a merciful death?”  The author goes a bit into the bio-ethics of these decisions and actions and the subtleties of all the distinctions.  Again, not a simple issue.

http://www.tc.umn.edu/~parkx032/CY-MK-MD.html

mps

It gets really dicey when the person in question has become mentally incapacitated when it comes to making a life or death decision in that moment.  It's a dreadful conflict of interest for the POA.

jfkoc brought up: If a POA becomes invalid once a person's cognitive ability prohibits choice how could any "form" hold up legally?

jfkoc that is the point exactly!  While we are healthy and well, we go to our attorney's office and write a will, we decide how we want things distributed, who will be POA, MPOA, PR, and also usually do a standard, boiler plate health care directive.   If we are unfortunate enough to ever get AD, or any of the dementing illnesses, the decisions we made years ago in our legal forms DO hold up.

When Dad needed it, I took over as his MPOA and DPOA.  Now because he had already been diagnosed with AD, he wasn't able to rewrite or change the choices he'd made long ago.  (He wouldn't have wanted to anyway.)  But the point is, that with a healthy brain, understanding the importance of his selections, he did make the decisions.  He put it in writing with a notary witness, and paid a lawyer for this service.  And once he did have AD, we all respected those documents.  

So what's so wrong with a person being able to write a very specific document, IN CASE THEY EVER GET A DEMENTING ILLNESS, where they (with a healthy and clear mind) can state their wishes?    Trust me, I will never change my mind on this.  Not today, not tomorrow, not ever.  I have no intention of getting AD and having to ride this thing out to the bitter end.  I JUST WON'T DO IT.  I don't want this for my daughter, sons and husband, but more importantly,  I DON'T WANT THIS FOR MYSELF. 

 I personally find the final stages of this disease worse than death.    So ok, if you want to call me a weenie, that's fine and I'll laugh right along with you on that one.  But I really don't want this long drawn out disease process in my future, or that of my family.  I don't want to get to the point where I'm choking on food, and can't even feed myself.  IMHO, with my own personal life philosophy, that would be worse than death.  (A DEATH THAT IS COMING WITH 100% CERTAINTY ANY WAY!)    

So all I'm really asking is that I should have the right to draft an ADVANCED HEALTH CARE DIRECTIVE SPECIFICALLY FOR DEMENTING ILLNESS.   If I am diagnosed, that my legal paperwork is respected and upheld with my WISHES.    This shouldn't have any impact on people with a religious philosophy, those who want a natural unassisted death from any cause, or those who have a strong right to life philosophy.  This isn't about their decisions and choices.  It's about MINE.  And a personal freedom that I take very seriously.  I don't want other people making decisions FOR ME.  I want to do that for myself.  But as we all know, at a certain point with AD, a person looses all ability to make their own decisions and carry out their desires.  All I'm asking, is that I be allowed to make those decisions now, with a healthy and clear mind, and that my legal paperwork will stand and clearly speak for ME.    

I don't understand why anyone would have a problem with this.  Seriously, if you don't believe in death with dignity, THEN DON'T ASK YOUR LAWYER TO WRITE UP THIS DOCUMENT.  Just take things as they come, and see where life takes you.   But after this experience with both a grandma, and my father, I'm not willing to just roll that set of dice.  I know that this disease can just pop up and bite you in the ass.   And if I ever have this problem, I want a guarantee that my wishes and philosophy will be respected.  And I'm willing to draft legal paperwork to prove it.   

I've also already talked to all three of my kids, my husband, and my doctor.   I'm not kidding on this.  I am dead serious that people should have their own right of choice, and the help that they need for a comfortable death of their own free will and choice.   

I won't allow this God awful disease to put me into a vegetative state for an indefinite period of time.  I just want a legal way to do it, and a quick and painless death.  

(And ok, I also want a family dinner, with time to say my goodbyes.)       

Soon after my mother died I had a Health Directive (Living Will) drawn up. Just as my mother had done. 

Surely anyone who has been a care-giver can see the necessity in this? You select your own directives, whether you want to be kept alive, to what extent you want doctors to go to, or if you want no unusual steps taken to keep you alive. It's all very clear, you select what you want. It's a very important document both for you and those who might take care of you. But you can ONLY draw up and sign this document while you are still mentally sound. 

And should you change your mind later, you can change it. 

It's a no brainer.

Still Waters Wrote:  A consent form like that would turn the medical community on its side. Imagine all the money lost in hospitals, physicians, attorneys, medications, day cares, medical supplies and nursing homes. If most people opted to die before they lost their ability to be independent. Not just Alzheimer's but all neurological diseases where there is no cure. 

Still Water, boy you got that right.  This disease process is a huge MONEY MAKER.  No one will be crying louder than the medical establishments. Isn't it sad that money becomes more important than human compassion and freedom of choice?  

Sadder still that eventually this issue of death with dignity for dementia patients will probably come down to medicaid totally running out of money, and bankrupting this next several generations.  Somedays I wonder if any one is paying attention to what's coming.  But I promise this SUNAMI is going to hit.       

Moish, I too drafted a standard boiler plate advanced health care directive.  (of course, there's not a word about dementing illness.)  But I'm on several medical sites, and you should see the discussions and articles about those directives.  It's amazing how you think you are making yourself very clear, but doctors are bound to look at all the various ways that those words could be interpreted.  

I've done several of the questions and answer sections with hypothetical situations.  Amazing really, that they can literally destroy the intent of those documents.   I was shocked and quite disturbed to see how doctors can change health care directive documents and decisions, especially in emergency situations.    

Dear Griz,

Thank you for your post. I agree that this is not an easy decision. You know the day is coming, but it is still heartbreaking. I have to make that decision tomorrow for my 93 year old dad with dementia. He doesn't know us anymore and is in and out of the hospital with respiratory infections due to aspiration. I am 100% sure he would not want to continue to be treated to stay alive for the type of life he is living. I am just so profoundly sad to say good-bye to him. 

Hey Moish