Living with Alzheimer’s

North is to south what the clock is to time There's east and there's west and there's everywhere life I know I was born and I know that I'll die The in between is mine I am mine - Pearl Jam

Read Time 3 minutes

Last week, during a long flight, I read this longform (~ 30-minute read) article from 2015, entitled, “Slipping Away. Jo Aubin has Alzheimer’s. He’s 38.”

The very last line just killed me, perhaps in part because of how much I, too, love Pearl Jam.

My eyes welled up with tears until I couldn’t keep them there. Inevitably they started rolling down my cheek. At which point I started really digesting how tragic this story is, on so many levels. Our failure to understand this disease, our failure to let people die with dignity, my own sadness for Robin, and of course my sadness for Jo—two people I don’t even know—but feel closer to in reading this.

After I read it, the first thing I did (after trying to convince myself the woman sitting next to me didn’t think I was crazy) was search online for anything else I could learn about Jo and Robin. I found this.


Ok, admittedly, I’m a diehard PJ fan and they are the only band I’ve seen live on multiple continents, but this just takes it to another level. (This song takes on new meaning and significance after reading both pieces.)

I shared the article with a close friend who just lost someone very close to him this year to Alzheimer’s disease (and whose oldest son has Down Syndrome, which you’ll understand the significance of in a moment). He responded to the article with something so beautiful that I asked him if I could reproduce it here (names have been changed to maintain confidentiality):

Thanks for this Peter. A good read over Saturday coffee.

Life, humanity, humility and in the end, however grudgingly…. acceptance….

This Alzheimer’s shit is just terrible. As you know we lived under this shadow with Jack for the past few years.  Our largest collective rationalization was, “He lived a long and happy life.” My private thought is this is just bullshit. I am still (2.5 months since his passing) deeply bothered by his loss of dignity and his obvious loneliness, isolation, and confusion that we just helplessly witnessed. He was just too good a person to meet this fate.

A young life (not to mention the possibility to affect the next generation) is a much worse situation. I do find the last line of the story about Jo uplifting. To me, it’s a big F-U to the disease and at the same time letting everyone know – despite the tangles and proteins – he is still there. Maybe even a signal or thank you to the caretakers and family. Jack did this on several occasions. The most powerful coming when he was most disabled. Wiped all of us out every time.

Our greatest philosophical minds have always struggled to explain these circumstances and at best conclude/argue they can only remain subjective and otherwise indeterminate – simply outside our realm of understanding.  A conversation topic probably best over good scotch and cigars.

Of course, living life while you can remains the best overall optimistic approach. Watches, wine, cars and once in a while…some carbs…

Curiously, the Eddie Vedder angle is a life thread for many people. My wife has a friend (another mom with a special needs child) who went to high school with Eddie. She notes that he was always this kind of magnet and a no-strings-attached kind of support. Eddie is always a headliner at a local music festival. Rodney, my second son, is a musician dialed into all this and takes his older brother, Steven [with Down Syndrome], to these shows.  Eddie always goes out of his way after the show to spend some time with Steve. Very cool and genuine guy.

Safe travels.

– Peter

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