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.”