The Story So Far

  • I'm a writer, photographer, consultant. Age 51. My father was a reporter and editor. Then he became something other than that. He died February 8, 2010 at 87. He was widowed in 2003. His decline started a little earlier. His sister died of Alzheimer's.

May 2011

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Susan O'Connell

Alan -
Thank you for publishing your experience here. I've been caring for my father since June, 2008, when my mother died. He's quite a bit younger than your Dad, but has been battling a number of neurological disorders for many years. He took a fall in March, which led to a prolonged hospital stay (during which he lost two toes and had arterial bypass surgery), followed by inpatient rehab in a nursing home. He was discharged to my care in June, and has been in a steady decline ever since.
Although I wouldn't wish this nightmare on anyone, it's reassuring to know that we're not alone. My best wishes to you and your family,
Susan O'Connell


I recognize (a) the folding repetitiveness [we eventually made an assumption about its being a sort of control-in-the-midst-of-mental-chaos thing, that was some self-soothing; eventually there was a counting stage that we realized was a pain control technique that helped my mother), and
(b) the need-help-to-go-somewhere-so-I-can-make-things-right mode (this was a heartbreaker for me because I could never get her convinced, and have it stick, that everything was handled and all was okay)

Alan, "it" will come for your dad and is probably already in the process of doing so. Because I tried to take pictures at the nursing home so I could share with family, I've been able to look back through the last 9 months (actually can look back further to her baby pictures, but that's not the point). This gave me clear visual cues for when she started actively dying (a topic I found to read up on via my phone while I sat next to her in the last days at the hospital).

The change was so THERE, and I wished I'd had enough insight to recognize it as I guess I would have been less surprised as the stages kicked in.

I hope not to have to go through waiting with someone who is dying again, not anytime soon, but the experience was frustrating, scary, profound, joyful, and absolutely tore me up (for my own sense of loss). Even though I lost my mother to the disease some time before all the ending stuff, who she still was - the core - was a precious relationship and I would have honored it forever, although she so wanted to GO.

I know you already know -- it's just not easy. And everything changes.

Hugs to you, hugs to your dad.


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