New York Times article: “For Some Caregivers, the Trauma Lingers”

To read the article click on the link.

This is a great article written by Judith Graham about the stress of care-giving. Graham describes Dr. Stone’s fight to honor her mother’s preferences that “doctors were to pursue every intervention needed to keep her alive.” It reveals the health care mistakes that were made as well as the pain and guilt that Dr. Stone still feels even after her mother has died. This highlights the constant vigilance needed to honor end of life wishes and living wills.

My comment on the article is below.

My family is on the other side of this equation and many have clearly stated that they don’t want to live if they can’t feed themselves. With the threat of autosomal dominant Alzheimer’s disease, ADAD, also know as early-onset familial Alzheimer’s disease, EOFAD, we have seen our family members linger in bodies while their brains atrophy.

My mom was 48 years old when her symptoms began. Implementing her seemingly simple request, to not be be feed or have medical intervention, was agony. A care facility that agreed to honor Mom’s living will when she was admitted, reversed their stance when she neared the end, forcing us to find another home. Mom’s end of life wishes required constant vigilance to ensure nothing extra was administered. This included antibiotics to heal an infection rather than simply provide palliative care.

The stress of making caregiver decisions, watching family members die, and the added layer of genetic disease throws a wallop that comes out in my dreams. I know other loved ones and possibly myself will succumb to this same fate. After Mom died, I had dreams about losing her in a snow storm or in a flood. I was always searching to find her, take her hand, and lead her to safety. Now, my nightmares have changed to autopsies and life decisions. I often wake with my hands clenched, trying to grasp the elusive cure for Alzheimer’s in an attempt to save my family.

R. Sargent Shriver died today, 1-18-2011

The New York Times has a beautiful tribute to Mr. Shriver.

I love the final quote of the article where Mr. Shriver tells his Yale students, “… look less at yourself and more at each other …”

I hate that we as a nation have lost another person to Alzheimer’s disease, but feel grateful Maria Shriver, Sargent Shriver’s daughter, is an advocate for defeating and teaching about Alzheimer’s. Here is a link from the HBO series, “Grandpa, Do You Know Who I Am?”

Maria, you and your father are admired and respected. I am sorry for your loss, that of your family, and the loss it represents to everyone who has lost or is losing someone to Alzheimer’s disease.


The Gene Guillotine is 77% funded on Kickstarter, only 2 weeks into this project and 23 days to go!

This is totally amazing. Thank you everyone for backing me!


Late last night the front page of the New York Times featured an article titled “Early Tests for Alzheimer’s Pose Diagnosis Dilemma.” The title of the article now appears to be “Tests Detect Alzheimer’s Risks, but Should Patients Be Told?” The comment I submitted to NYT regarding that article is #45.

My goal is to connect with others who are impacted by Alzheimer’s or a genetic disease.

Excitement & Fear

All the excitement is true,
And I’m also fragile.
Hope is heavy and fear creeps up.
This fear-excitement edge.
What am I doing being so open? Even if this seems to be my mission in life,
I don’t have to choose it. I could do anything else.

I hibernate, a mini one… an ostrich’s head buried in the sand, while my body (my website and kickstarter) are prominent displays of my book. I have heard that excitement and fear have the same physical manifestations.

I hesitate to reveal this–I’m supposed to be professional now, showing only confidence and courage.
My crying eyes must be from my “excitement” right? Another tear, another excitement?

Will you feel when you read my book? It’s my story, loaded with my past and triggers instant tears in me, but will it matter to you? It”s the cost-benefit analysis that has no easy answers. Is this ‘stripping’ worth it?

Tenderly, I hold my heart and head, as I continue onward, taking the next most logical step.

I’m honored to have your support.

Want to do more? Here are ways you can support this book:
*Go to kickstarter and become a backer of my project.
*Sign-up for updates on my website.
*Forward this as an email to everyone in your address book.
*Add links on your facebook or twitter account to my website and my kickstarter webpage.
* Watch the CNN 2011 documentary on Alzheimer’s disease. (Date to be determined.)