This December we are sharing a series of courageous stories about individuals with Dementia and other neurodegenerative diseases. 

This is Jean’s story: 

In the late 80’s and early 90’s Jean Rough sat beside both of her parents as they died. Her mother died of Alzheimer’s, a long slow painful decline. But her father chose to voluntarily stop eating and drinking.  He wanted to die on his own terms.  And Jean came away from helping him saying, “that’s how I want to go.” His case was an example of strength and courage that Jean would draw from when diagnosed at age 71 with Lewy Body Dementia and Alzheimer’s Disease.  She knew from caretaking her mother, what her future would be if both diseases progressed naturally.  She also knew that she must choose her father’s path before she lost all capacity to make decisions and independently care for herself.  She would choose to voluntarily stop eating and drinking (VSED) when the time came.  Until then, she would do everything possible to live long and well.

Jean reached out for information and support to Alzheimer’s support groups and centers for brain wellness. She changed her diet and other daily routines.  She started following the Bredesen Protocol.  She was committed to doing what she could to sustain her life as long as she could. 

She was equally committed to making sure everything was in order when the time came to say goodbye.  To sustain the non-profit that she and her husband Jim were building when she was diagnosed, she set up an Airbnb in their home.  This would allow his Center for Wise Democracy to thrive when she was gone.  To ensure she had the right care in place, she worked with family, hospice­­ and her physician to support her VSED when she was ready.  She updated their will and prepared all their finances.  And finally, she and Jim took breaks from work and travel.  They took two beautiful cruises largely for the time needed to talk through what was required from each of them as her disease progressed. 

As Jean started losing her capabilities, she was fearful of waiting too long before acting. She referred to her Alzheimer’s journey as the Three Phases of Jean.  Jean #1 was bright, organized and loving, largely before her disease took hold.   Jean #2 couldn’t follow a lot of what was happening, but could still be there for others and determine a plan for how she wanted to end the suffering from her disease.  Jean #3 would be too far gone to execute that plan.  Therefore, in Jean’s mind, action was needed from Jean #2.

At the age of 73, Jean was experiencing increased periods of “blanking” and hallucinations.  They scared her. She knew the window of capacity where she could independently stop eating and drinking was closing.   It was time to act.  Thanks to her planning, she and Jim were prepared. She drafted a final letter documenting her choice and her decision, her physician and hospice support team was in place, a hospital bed was delivered, the family arrived, and everything was ready. Most importantly, she was ready.

Without pain and suffering, with comfort measures in place and loved ones present, Jean followed the model of her father. She died in just over a week’s time.  On her own terms, in her own home and before the disease stole her essence.   Jean gave herself and her loved ones a gift. A gift to her community as well, as others are now choosing to follow Jean’s path.

No one could ever be ready for Jean to die. And that’s true even now after she’s gone. But she died well, and she knew it. Even in the face of Alzheimer’s Disease and Lewy Body dementia she was able to make the choice that was right for her.   

Learn more about Voluntary Stopping Eating and Drinking (VSED).