gradually back to the future


September 25, 2016.

Dear MAS subscriber:

In October 2015, under threat of being denied access to my mother and potentially being the subject of legal action, I removed more than two hundred and fifty posts from this and other sites and blogs that I run.

I wasn’t afraid of legal action, but I was afraid of being denied the right to see Mom. My daily visits meant the world to both of us, but especially to her–they kept her going. Her best interests were my primary focus. Now that she’s gone, I’m republishing some of the posts I had to take down. That means that if you subscribed to MyAlzheimersStory before October 2015, you will receive posts you may already have seen before. Also, over the next little while, all subscribers will get more posts than usual. Normally, I post two or three times a week. This frequency may change in fits and starts, and you may sometimes receive more than one post in a day. I plan to flag and tag these posts with the word “Flashback”  so you know which pieces are archived material that’s being republished and that you may or may not wish to read. Some of the posts may have broken links that are directed at content that has not as yet been republished. Sorry for that.

I also apologize in advance for any inconvenience or temporary annoyance the republication may cause to longtime subscribers. On the other hand, it gives newer subscribers the opportunity to see content they otherwise might miss.

I fully intend to continue sharing Mom’s Alzheimer’s story as well as my own–there’s so much left to say! I also intend to keep advocating for better eldercare, particularly for those who live with Alzheimer’s disease and other dementias, including pushing for change in our broken eldercare “system,” speaking out against the inappropriate use of antipsychotic medication as well as elder neglect and abuse, and changing the way we see Alzheimer’s disease and other dementias and the people who live with them.  I will also champion the cause of dementia care partners worldwide.

Thanks for your patience as the story continues to unfold, sometimes in ways that are more like a chopped up ball of yarn than a straight line. Thanks to Lemony Gregg for permission to use the beautiful image (a cropped version of her photograph entitled “Gradually”) that tops this page. There’s lots more of her stunning work here: LemonyShots.

I appreciate your understanding and support,

160428 Susan's new specs





3 thoughts on “gradually back to the future”

  1. Ditto to what Liz said above! Thank you for continuing to educate us and to share your experiences. Just this past Saturday night, my 61-year-old, physically fit husband with Early Onset Alzheimer’s was given anti-psychotic drugs, without my permission, when he was taken by ambulance, strapped to the gurney, by firefighters who refused to de-escalate his behavior with conversation because, in the words of the firefighter I spoke with on the phone for a minute “they didn’t have all night.” Yes, they do! To calm a person who is demented and confused? Yes, indeed, take all the time it requires to calm and sooth my husband, rather than strap his wrists and ankles to a gurney and then give him Haldol, Bendryl and Ativan without family permission and draw blood and order tests in the ER of an unfamiliar hospital! The new caregiver has learned his lesson (call me after 5 minutes of inability to redirect, rather than wait a half an hour or more in a grocery store parking lot where strangers are likely to mis-read the situation and call the police/fire, like what happened Saturday) and I learned a valuable lesson, too, but my husband bore the brunt of the experience. So, Susan, your words are valuable to me and to many others. Thank you!


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