Alzheimer's and "Death with Dignity"

[rsh555]

I live in Oregon and consider the availability of "Death with Dignity" a great comfort, with respect to many of my potential illnesses. But hanging over my head is the fact that I have one Alzheimer's gene, and my mother and maternal grandmother both died while suffering the disease. Neither of them could have taken advantage of "Death with Dignity" even if it had been in existence at the time, but their final days were tragic both for them and those who loved them. I am well aware of the legal complications that would arise in any attempt to revise the law to permit the patient, either before onset or in the early stages, to identify some stage of the disease at which a fatal dose could be administered.

Now that it is possible to anticipate, rather than just to await, the symptoms of Alzheimer's, it seems to me that there should be some means of controlling the limit of one's final days.

I am not aware of any existing discussion of this situation and its potential solution, and I hope that others may feel as I do, and may be more capable of devising a means of its achievement.

[Tincup]

Welcome rsh555,

It is an interesting question. As an only child, I was responsible for my mother's care through dementia. In her case, I made the choice not to treat a respiratory illness with antibiotics (with her doctor's concurrence) , which led to her demise in several days.

In my circle of friends who have had parents with dementia/AD, we joke about taking up extreme sports, where a mental miscue would lead to sudden death (jumping off cliffs on skis, "swooping" while skydiving & etc). To a certain extent, I already do this, sometimes skiing faster than 80 MPH (~130 KPH).

My 4/4 spouse and I feel similarly about not hanging around in deep dementia. My children also know my feelings. As to the laws that allow assisted suicide, our state has one patterned after Oregon. As you point out, by the time you'd like to take advantage of such a law, you may not be able to. When you can take advantage of it, it will likely be "too early." Having talks with my family so they can implement something such as what I did with my mother is also important (she and I had long talks about this when she was cognitively well).

My biggest strategy is one of prevention. We are patients of Dr. Steven Gundry and have detailed this personally. Also exercise, fasting 22 hours/day and 5 consecutive days out of every 14 and so on.

A more general primer, written by Dr. Stavia is here. Additionally a search function is available by clicking the three vertical dots in the upper right of the screen.

[Magda]

Welcome to the site rsh555.

You have raised a difficult question.
I am not sure I can help with finding an answer.
Once, I read a book "Still Alice" by Lisa Genova about people in early onset Alzheimer's, it moved me, and made me think what would I do, If I knew I am loosing myself to this disease. I still have not found the answer... What I know, is that we live in very exciting time, when more than ever is known, and possible in terms of prevention. It have been proven that we can influence our genes expression by for example making right food choices, and staying active.
Some members of the community follow Dr. Bredesen ReCode protocol some, like Tincup mentioned, Dr. Gundry. The important thing is that we have tools, and strategies available to select from. You are already onto a great start because you are here, looking for answers and information.

I also invite you to browse around our Primer, and the site in general. Do not hesitate to post if any questions arise.

Magda

[Nords]

RSH555, here's Sandy Bem's story:
https://www.nytimes.com/2015/05/17/maga ... .html?_r=0

Personally, I think I'll always be curious about the next sunrise.

[Fc1345linville]

The laws being passed, in the US and globally (with possibly the exception of Switzerland) aimed at the issue of "Death with Dignity", do not address the fact that a person diagnosed with Alzheimer's Disease could live up to 10 years or more after diagnosis. Physician assisted "self-determination" is generally restricted to those who have Doctors willing to certify in writing that their patient has less than six months to live. That restriction excludes many Alzheimer's Disease sufferers who have an incurable disease that will ultimately kill them, but may take many years of suffering by the patient and care givers before death. Understandably Doctors will not sign off.
I submitted the post below a few months ago on a different but related subject, that describes an "alternative solution" that will continue to gain followers, so long as state legislatures frame the laws to exclude suffers like Alzheimer's patients from Physician assisted death with dignity.

FC
------------------------------------------


Re: Accomplished Patient Opts for Suicide in the Face of AD
Postby Fc1345linville » Sat Aug 19, 2017 2:45 pm

This tread may have been gathering dust the past three years, but I am certain that the subject remains one of primary interest to many members and readers. If you are unaware of The Final Exit Network, http://www.finalexitnetwork.org/index.html, the site has a lot of information on what is available to those who want a death with dignity. When you open the link, note on the right side of the Home page the many articles on this and related subjects, all fairly recent. Enabling legislation is still only in a handful of "blue" states, and none of them seem to deal with dementia. I think they all require a licensed Physician to certify that the person has no more than six months to live.

I personally am trying to do all I legally can to ensure that my life will end if I am diagnosed as having AD, and I get to a point where I do not recognize, or cannot communicate, with my wife, children and grand children. My wife and I recently had our lawyer overhaul and strengthen our Durable General, and Medical, Power of Attorney documents. Perhaps most importantly we also created very detailed Advance Medical Directives, specifically tailored to the wishes of each of us, and covering any medical condition we might encounter, not just dementia.

I hope this is useful to some.

Fc

[ZenGinner]

Thanks, so much, Fc1345linville. I find the link comforting.

While I am only 52, with no cognitive decline at this point, it worries me. (As can be anticipated, as I also have the "worrier" gene. LOL).

I am currently working into the recommended protocols, and had already lived a relatively healthy existence. However, after 23andMe, I discovered I have MANY genes that combine to further increase my risk of AD. The only positive so far, no known diagnosis of AD in the family (only 1 alcohol related dementia, and one stroke related dementia.)

I thought I had gotten past the original "shock" of my 4/4 discovery. However, I recently realized it was more of an undercurrent concern for me than I acknowledged, when I saw the news coverage of the war criminal, Slobodan Praljak's, suicide at his hearing @ the Hague. Instead of marveling at how he got poison into the proceeding, I found myself thinking, "I wonder what he took that worked so fast, and without any apparent discomfort."

Now, I can follow the Final Exit group, and let my subconscious rest. And, I will continue to concentrate on the protocol.

[Nords]

Let me offer another counterpoint.

As I mentioned on another thread, last month my father died from complications of end-stage Alzheimer's.

Dad had a tough body even before his cognition was failing. He controlled his blood pressure with Lisinopril. He was a prostate cancer survivor. He hiked over 40 miles a week in Rocky Mountain altitudes. It became clear that his body would outlast his brain as Alzheimer's had its way with both of them.

For more than nine years after he first noticed his declining cognition, he was surprisingly healthy. He lived independently (alone!) for nearly three years. During early-stage Alzheimer's he inflicted a perforated ulcer on himself (malnutrition) and nearly died in the emergency room, but the surgeon saved his life. Dad rallied and regained his health. He endured chemotherapy for multiple myeloma. More than six years into Alzheimer's he dealt with a fall that took several staples in the ER to close his scalp wound, and on the way back to the care facility he asked to stop for ice cream.

For the first seven years of Alzheimer's, he regularly went out for meals with my brother. Dad enjoyed museums and zoos. They took long walks around the neighborhood. He was the "street mayor" of his care facility. In his mind, he thought they'd hired him as a consultant on their engineering needs and let him live there on weekends. When new patients checked in for rehab after hospitalization, he'd introduce himself and ask how they were doing. He'd talk them through a "Welcome" tour and suggest ways to make the most of the facilities. He excelled at coffee-shop conversation and customer relations. Sometimes it took several days for the newbies to realize that Dad was a resident and not a member of the staff.

Even as end-stage symptoms crept up on his body (incontinence), Dad was still strolling around the care facility's grounds, enjoying the sunrises and sunsets, and watching the birds & squirrels. He spent most of his time in his room working on jigsaw puzzles, which were always his favorite hobby and are particularly good for dementia patients.

For the first few years he was aware of his declining cognition, and it distressed him. He handled the morning wakeup's confusion and disorientation with photos, calendars, and post-it notes. Eventually he forgot that he had Alzheimer's and he relaxed. The last years of his life were the happiest he's ever known. Maybe today we would have diagnosed chronic depression, or maybe he just felt the burdens of society's expectations on how to live his life. Alzheimer's freed him of all of that and helped him regain the pleasure of being in the moment.

After nearly a decade of what might have been his happiest years, his end was relatively sudden. After a weekend his walking coordination began to fail, and during the next 72 hours his blood pressure dropped dangerously low. By Friday we were arranging for hospice (and 24-hour nursing). Friday night he needed morphine to calm his restlessness. (He'd never used morphine in his life.) He died Saturday morning.

Was Dad suffering? No more than any of us living their daily lives. He was still able to communicate. His caregivers handled the details so that he could live his life.

It was only stressful if you were one of the caregivers. It was only sad if you knew him before Alzheimer's. It's only depressing if you've read "Flowers For Algernon."

I'm a submarine veteran. In 2002 our community experienced a huge shock when retired Rear Admiral Chester Nimitz Jr. (the son of the WWII fleet admiral) and his spouse committed suicide.

To most (and in the popular media), the story of his death was an exemplar of command and control. He was the captain of his soul and the master of his fate. Well done, sir.

To many others, he was a control freak who abused and coerced his spouse into allowing him to kill her before he took his own life. He even intimidated their adult children into tacitly supporting his manipulative scheming. Was he clinically and chronically depressed? Why did they not seek palliative care? What about hospice?

I'd like to think that I'm self-aware of my tendencies and able to rise above them. The stories of Dad and ADM Nimitz reassure me that dementia, even Alzheimer's, is not grounds for euthanasia. Even after I'm no longer mentally competent (and can't remember what the phrase means), I'll still enjoy conversation with a good cup of coffee. I'll still be able to enjoy ice cream and nature. I'll still be capable of finding happiness in the world around me.

I don't need to be a nuclear engineer (or writing my next book) to enjoy living my life.

Maybe I don't need to be able to paddle in after a surfing session. I'm not sure.

I do know that I can still live a happy life for years while coping with Alzheimer's. I don't want heroic life-extending measures like heart resuscitation or respirators or feeding tubes, but I'm happy to use palliative care and hospice. I'm still convinced that I'll want to see one more sunrise, even if it takes 5 mg of morphine for me to enjoy the view.

I'm certain that I'm not going to let an earlier version of me dictate that it's permissible to kill an older version of me when I can no longer maintain a cognitive threshold.

I'm adamant that I'm not going to lay the executioner's burden on my spouse, my family, or any of my caregivers.

[Jafa]

Thank you Nords. Much food for thought in your eloquent writing. Your Dad sounded lovely.

[NancyM]

Beautifully written Nords. Thank you.

[NF52]

Nords,
Thank you for your post, which brings your dad to life. I'm glad he was able to be both a consultant and a mayor in his last years. I strongly believe that the value of being a "person first" with disability, whether dementia, chronic illness or developmental disability, needs to be recognized. The specifics of your dad's life speaks volumes to the value of that life to him, his family and those he met. I hope you will consider sending it to the NYT, WaPo, Los Angeles Times, or your Dad's hometown paper.

Like your dad, It was perhaps a gift of my mother's ApoE 3/4 (or possibly 4/4) , to have years buoyed by her cognitive reserve, and then a steeper decline for the last 2 years. Her life with dementia was not the happiest time of my life. But it may have been the happiest time of her last 20 years. She had been clinically depressed, and even suicidal, for several years in her 60's after my dad died of cardiac arrest. But by her early 80's, when she could no longer remember who she had seen that morning, she was thrilled to regularly see her children and grandchildren, to visit an exhibit of Impressionist paintings, to keep a daily chart of the Dow Jones average and her favorite stocks, to say hello to babies and to eat chocolate almond ice cream. She knew nothing of plaques and tangles, but often speculated that "if I could open up my brain I think it would be a bunch of tangles like spaghetti in there!" About the only time she was truly upset was when she forgot that my dad had died 20 years before, and called me worried, since she "knew he would never leave her". She was not the mayor of her nursing home, but she was the grammarian, correcting minor errors in the signs posted there. And when I had to explain to her that she couldn't return to her much-loved home due to severe congestive heart failure and the need for daily medical monitoring, she calmly said, "Well, I will just have to cherish the wonderful life I've had." She died three weeks later, after 4 days of palliative hospital care that gave comfort to her and her family. She cherished her whole life. I am glad we did also.