Dutch patients with dementia to request euthanasia

[Indywoman]

I have been thinking about this topic for a number of years, and want to thank TheresaB for the restart of this thread. It requires tremendous courage to squarely face our fears and think about becoming agents in our own death, not to mention talking to our families about these thoughts. Yet there is something freeing about this as well. In J.K. Rowling’s Harry Potter books, Harry Potter refused to use code words, instead directly calling his archenemy “Voldemort” unlike the other wizards, who fearfully used euphemisms like, “He who must not be named”.

In this vein of having difficult conversations and naming that which must not be named, I would strongly recommend two books: Atul Gawande’s, Being Mortal and Finish Strong: Putting YOUR Priorities First at Life’s End by Barbara Coombs Lee. The indefatigable Wendy Mitchell who was diagnosed with early onset Alzheimer’s in 2014, also wrote a moving book- Somebody I used to Know, and has a blog at https://whichmeamitoday.wordpress.com/ It is filled with candor, wisdom, and unflinching honesty.

To specifically respond to Slacker’s and TheresaB’s question about “when one knows the right time” or when is the “cutoff time for interventions”, my personal decision is during the fuzzy latter part of stage three of the seven stages, i.e when performance on memory tests are affected and physicians will be able to detect definite impaired cognitive function. I would rather err on the side of shortening a portion of my ‘still okay’ life than prolong my life when I was not me, unable to execute a plan.

This would be the trade-off that I think I am willing to make. It is not deciding on a predetermined bar that falls more on the early side of AD that saddens me; instead what saddens me is thinking about being unable to have a choice in my death. Of course, we know that it is not possible for someone with AD to have the option of “death with dignity” because in the states that allow physician assisted suicide, the person has to be of sound mind. This is a horrible catch-22. So here is what I have done with the wise counsel of an elder care attorney who is also a registered nurse and certified family mediator.

- Filled out the Washington state’s, Alzheimer’s Disease and Dementia Mental Health Advance Directive which is 24 pages, again leaving it open to revision, and adding my addendums, with the knowledge that my state may choose not to recognize this.

- Started the conversations with my cardiologist and primary care physician about my wishes to control and have choices about my death. They are both very caring and compassionate doctors.

- Had and am having difficult conversations with my spouse and children about what I want and when. This has been so very hard for all of us, but the door is open, and the discussions will continue. It helps that they saw the tremendous unraveling of my mother when she got Alzheimer's. I started these family conversations five years ago when my husband and I redid our wills, and before I knew my 4/4 status as of a year ago.

- Recorded three short videos at different time periods about why I want to have medical assistance and choice in dying. This too will be ongoing, with more recordings in the future.

- Have been saving money for a number of years for places like Dignitas, the Swiss dying agency which I hope would not be my only option, but given the current laws….

I may never get Alzheimer's, and am doing what I can to help my chances, with so much help from this wonderful site. I do not equate planning with giving up or giving in, or thinking I can foretell the future. Atul Gawande writes near the end of Being Mortal, “ People have priorities beyond merely being safe and living longer. A chance to shape one’s story is essential to sustaining meaning in life….Our ultimate goal, after all, is not a good death but a good life to the end.”

[Tincup]

With all the nursing home rules now I wonder it the good nun and my brother would be allowed this latitude.

In 2013, I made this decision for my mother with the support of her doctor. She was in a memory care group home. She passed in several days.

[bladedmind]

I’m not at peace with death, but I accept it. From my early adult years on I have taken time to think about my mortality. Apologies in advance, I am going to write some harsh truths about dementia from my own experience, so please stop here if you do not want to read them.

I’ve read stories here about a caring peaceful end for those with dementia, and was glad to hear about it. There are other trajectories though. My father -- and almost all of his many siblings --developed dementia. In his case it was probably Alzheimer’s, accentuated by strokes, leading to garbled communications, frequent delusions, and dangerous aggression (he wasn’t aggressive earlier; my childhood was ordered but kind and happy). His congestive heart failure got worse, and for two or three years he was breathing 24/7 like someone who had just run up a hill. The oxygen deprivation evoked terror and panic. To manage that and the aggression, they pumped him up with thorazine and nighttime sleep medication. He was physically tough, so the DNR order was not relevant for a long time. Almost no personality remained. It occurred to me that if someone had deliberately put him into a state of confused inexplicable terror for several years they would deserve imprisonment for a long time. Yet, all were pretending to respect his right to life. I’m glad that the care center was devoted and took care of people as best they could. I was also disturbed, however, by my experiences just outside the center talking with weeping relatives of the afflicted who were visiting in the vain hope that the loved one would be getting better. That hope would be worse than understanding that there is no reversal.

I do NOT accept the sentence of dementia. I will go before my personality deteriorates.

[Saskia]

I am so grateful to be in the Netherlands where I will have a choice to plan this openly. I assume it will remain hard to pre-determine (and later: recognise) the "cut-off point" though, both for the patient and the loved ones - there are probably clear guidelines and stages but I'm not emotionally ready to process that information... am 45 and have no symptoms so I can hopefully focus on prevention for a long time to come.
Gloomy topic but important to think about indeed.